Wednesday, October 31, 2012

In the Throes of Chronic Disease

Disease?  I swear I'm not infectious...well...maybe I could pass this sniffle along to you, but that's not what I'm talking about here.  It's been just about a year now since I started down this road that is rheumatoid arthritis (RA), and like it or not I've got to come to terms with this word.  Illness?  Syndrome?  Disorder?  None sound particularly appealing or something I want to be associated with, but I guess I have no choice, right? 

I've had a few people lately ask me how I'm doing (thank you!) and it made me realize I haven't really given an update lately.  Not that you all need one, but I sometimes just need to get this stuff out.  Maybe more to help me come to terms with some of these thoughts rolling around in my head.  Truth is, I don't know how to respond to the question, "How are you doing?" with a concise, honest answer.  Quick and easy (and maybe what some people are hoping to hear), "I'm fine."  And that's true most of the time.  Long answer and the one some people really don't have time for (and please believe when I say I'm not trying to be cynical here, but regrettably I have been that person before), "Some days I want to stay in bed because I know when my feet hit the floor it will feel like someone was whacking them all night with a baseball bat.  Some days I can barely work a computer mouse because of pain in my fingers, wrists, elbows, and shoulders. Some days I'm so tired I could fall asleep in two seconds even if sitting straight up on a hard rock.  Some days I feel completely 100% normal.  So how are you?"  Smile. So how do I answer that question?  I find myself saying things that don't really mean anything like, "It is what it is."  Well, isn't it?

When I first got diagnosed with this...disease, my mind went straight to the long term 'what if's.'  What if I develop pulmonary fibrosis? Heart failure? Vascular insufficiency? And on and on and on.  I don't think I ever really thought about the day to day issues that come with a chronic illness like RA.  Honestly (and here's the cynic in me), whenever I heard other people talk about chronic conditions that dealt with subjective issues such as pain or fatigue (fibromyalgia, chronic fatigue syndrome, etc) I just wanted to tell them to suck it up.  Get some more sleep, take an ibuprofen, and get over it.  We all have our issues.  These thoughts intensified after Eric died. (For those that don't know Eric is Gregg's brother that died a few years ago from cancer.)  It could be a lot worse, people...a lot worse.  And while I know that's true, I have to stop and apologize here to anyone I've ever had this thought toward (you probably didn't even know it).  These things, although not as scary, not as painful, not as tortuous as something like I perceive cancer to be...they are real.  And as I've come to realize from personal experience, the psychological warfare that goes along with these types of conditions can be pretty deep and dark and scary.

For some reason, as I was getting ready to go to bed a few nights ago, the thought hit me, "This is going to be your life for the rest of your life."  The thought of being on this roller coaster ride of pain and fatigue and not really knowing what's going to happen next for the rest of my life is seriously too much for me to take in.  It's too big.  Too overwhelming.  It's gotten to the point where when I'm on the top of a hill I can't even enjoy it because I'm just anticipating the next drop.  It seems like it's almost inevitable. 

The term 'new normal' is one that's become all too familiar since Eric's passing.  It's a reality that most of us have to deal is an ever dynamic entity that often does not go the way we planned or hoped it would.  This is my new normal that I have to get used to.  And taking it even further, there are going to be many more 'new normals' to come...and I will have to get used to each one of them.  I guess this is me saying to myself, "Self, suck it up!"  Because if I don't...if I just keep on with this "this is my life" crap, then I will quickly slip into the next battle of that psychological warfare I was talking about...maybe you're familiar with it...self pity?  If I don't suck it up, my focus turns inward and it becomes all about me and what I'm feeling and what I don't get to do anymore and the plans I had for my life that will probably never come to fruition.  Sound like a very healthy place to be?  I think not.

Now I'm not saying that if you suddenly find yourself in a similar situation to completely ignore these push them to the very backs of your minds with no intention of ever digging them back out again.  There is a fine line between going full on into battle (and trust me, self pity is a self-perpetuating, never-ending, hopeless battle) and crowning yourself the Queen of Denial with the "Problem? There's no problem here" mindset.  No, this stuff isn't to be ignored, either. 

So here's a lesson that I learned from my late brother-in-law.  It's one that he taught by example...through how he lived when he was sicker than sick.  He took his concerns, issues, and fears (and yes, he had them) to the only place that promises true rest.  He took them straight to the feet of Jesus and laid them down.  Even though he was going through what were most likely the most difficult moments of his life, Eric gave it back to God and kept James 1:2 close to his heart (and often recited it out loud in the throes of his battle). "Consider it pure joy, my brothers, when you face trials of many kinds..."  I personally never once heard Eric complain or bask in self pity...and if ever there was someone who you could called justified to do so, it was him...young wife, new baby, great career.  I'm sure those "Why me?" thoughts crossed his mind, but he seldom if ever let you know it.  In fact, in his last few months when he was too weak to get out and do much, he called other people...not to ask them to pray for him, but ask how he could pray for them.  Uh...that's not normal, folks.  That's pretty much completely contrary to our human nature.  That's evidence of the Holy Spirit that resided in him. 

So, yes these subjective issues that I used to roll my eyes at and that I now find myself in the thick of are entirely real, but they are not invitations to sit back and wallow in my own little world and worry about what's going to happen to me in the future.  But there is an invitation to lay these thoughts and fears down with my Savior.  And once they're there, then I can finally look outward and see there are other people that need their burdens lifted too.  Maybe then, instead of wallowing I can use the constant (and often more than annoying) presence of this disease to be a constant reminder to me to lift someone else and their need up in prayer.  Lord knows we all need it. 


  1. Martha, you do me in every time I read one of your posts. I did not know that you have RA. But I have wondered over the past year why you have been so quick to comfort or encourage me (and really seem like you care!) Now I know. Thank you!

  2. I did not know you had RA either. But, anytime you want to talk, let me know. Matt has had it since 2010. He is in medical remission now, but lots of fears and prayers in the process.